Report Launch: Informed Choice? Giving women control of their healthcare

The first report from the All Party Parliamentary Group on Women’s Health (WHAPPG) in the UK highlights insufficient care and concern for women with endometriosis and fibroids. If you would like to download a copy of the report you can do so here.

The WHAPPG has found that women are not treated with dignity, are not provided with sufficient information about their treatment options, and are not told about treatment side-effects appropriately when counselled about their gynaecological health.

In a survey of over 2600 women (with endometriosis and fibroids):

42% of women said that they were not treated with dignity and respect

62% of women were not satisfied with the information that they received about treatment options for endometriosis and fibroids

Nearly 50% of women with endometriosis and fibroids were not told about the short term or long term complications from the treatment options provided to them.

The report, which will be presented this afternoon (Monday 27th March 2017) by the Group in Parliament, reveals how these women were treated across the pathway, some of the barriers that they faced in getting a diagnosis and treatment, and the complete lack of control and choice they were offered over their own care.

Recommendations

Information resources – women need to be offered written information on gynaecological issues with a full range of information about the condition and what their options are. These leaflets should be endorsed by the relevant clinical bodies and patient groups and the same generic, pre-approved leaflets should be made available at all centres, Trusts and gynaecology clinics. GPs, secondary care clinicians and nurses should provide or signpost women to high quality information and resources about endometriosis and fibroids, their impact and treatment options.

Endorsed best practice pathway – this would mean that women would be streamlined more quickly into the right care, saving costs from unplanned admissions and ensuring women get access to all treatments. This should be agreed by the relevant Royal Colleges and patient groups.

Education to include menstrual health at secondary schools along with wider awareness – far too often women put up with symptoms and incredible pain because they are not aware of what is ‘normal’ and they feel stigmatised by talking about ‘women’s problems’. Education modules should be included at the RCGP and RCOG for recognising and treating fibroids and endometriosis.

Multi-disciplinary teams and clinicians working together – to ensure access to all treatments for women. Best practice pathway should be followed in this regard.

NICE Guidance where it exists should be followed. These should not be implemented variably across the country as is currently the situation.